OUR JOURNEYS

Patient story

Sue Evans

"To this day, I wonder what could’ve been if they had given me the echo when they should have, in September 2009."

- Sue Evans

In September of 2009, I was walking to my car after work when I started to feel heavy chest pain, hot sweats and became extremely nauseous. I went to ER, they did some testing, and everything looked okay. The EKG revealed a left bundle block but nothing to be too concerned with. They set me up with future testing and to see my Internal Medicine Doctor. I went through a few more tests there, and it showed nothing-they just told me I was out of shape.

I tried working out to an exercise DVD, but could only last seconds before thinking 'wow, they are right. I am out of shape'. As time progressed, even coming up my stairs from doing laundry would exhaust me. I was in and out of appointments until January 2011, when I went to my physician assistant with a sinus infection. He did blood work, and that night he called me and told me that my hemoglobin was high-and that it meant I was starving for oxygen.

He sent me to pulmonary. The pulmonologist looked over my records and told me he wasn't sure what was happening, but that I needed an echocardiogram. The next morning I had the echo, and couldn't help but wonder what the doctor meant when he said he didn't know what was happening. After my echo, I requested my medical records only to find out that my internal medicine doctor had dictated in September of 2009 that my echocardiogram was normal-but I had never had one! At my next appointment with the pulmonologist, in February, he told me I had very severe Pulmonary Hypertension.

In March, they started me on Ventavis, but by April, I wanted a second opinion. They agreed because they felt I should get evaluated for a heart and lung transplant. They faxed my records over to another facility, and that night I received a call from a doctor wanting me to come down and be admitted. He told me I was extremely sick, and he was afraid for my life. I didn't realize how bad my heart was-he told me that if I stayed on Ventavis, it's possible I wouldn't even make it through the year. I was admitted into ICU and started on Flolan, and I was discharged 10 days later.

I am currently taking Letairis and Veletri, and I am also on oxygen with extertion and when I sleep. My doctor doesn't feel that I'm responding as well as I should with the medications, but I am maintaining. To this day, I wonder what could've been if they had given me the echo when they should have, in September 2009. Thanks to my loving husband, children, and family, I have lots of support.

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